<<Disclaimer: Verify this information before applying it to your situation.>>

Ah well - at least I can no longer claim to be in the dark.  Thanks to the
many who replied with wonderful insight, precise knowledge... and of course a
few well deserved/earned jabs to my desire to remain in a semi-state of
denial... oh well...was good while the party lasted.   =)  (No, I didn't stop
eating GF... just allowed my mind to wander down the "real" hamburger bun
aisle in my dreams... LOL).

Here's a summary of what I learned for those who requested one:

1.Wheat allergy is measured with a blood test called an IgE and a RAST test.
Gluten sensitivity is measured with the IgA and IgG antibody tests, and the
IgA - AEA (anti-endomysial antibody test). Wheat allergy is actually quite
rare, whereas gluten enteropathy is fairly common! - far more common in fact
than doctors realize....it is just not being diagnosed!

2. My understanding is that Celiac disease is what does the damage to the
intestines, not intolerance or allergy.

3.  I've read that the definition of Celiac is three-fold:

1) an immuno response to gluten

2) damage to the intestine from this response and

3) improvement/healing when gluten is removed.  Therefore, you could
have a wheat allergy without damage (yet) and not technically have
Celiac disease (yet).


4. An autoimmune disease like celiac causes damage to organs.  Rheumatoid
arthritis damages joints,  Lupus damages internal organs, scleroderma
damages skin,etc by the immune system attacking ones own body in
error....This is an oversimplification in the interest of an example.  An
allergy causes uncomfortable overproduction of histamines that can be
stopped with allergy medicine such as "anti"histamine.  There is no real
comparison between an autoimmune disease and an allergy

5.  Read www.finerhealth.com for an in-depth discussion of the connection.

6.  The biopsy is the gold standard in the diagnosis of Celiac disease.

7.  When celiacs are diagnosed, unless they are in terrible shape, the
damage is almost so minimal that many docs and labs miss it. I can almost
always be seen only under the microscope. The damage starts just at the
tips of the villi, and that is very hard to see even with the microscope,
yet it's damage enough that it causes lactose intolerance because that's
where the lactase (which allows us to digest the lactose) is produced. Next
step is that a few of villi start to get slightly flat: and this too is
still very hard to see. Then the villi get flat in some places, and these
places can be easily missed in the biopsy . . . on and on an on in stages.
The negative blood test doesn't mean much either: those tests return from
20 to 50 percent false negatives normally.  But wheat allergies do not damage
the villi. I have read that intolerances to either lactose or soy can do some
damage,  but not to the extent that gluten can. Remember, Denial is not just
a river in Egypt :)

8.  The following quotes came from the archives at:
http://www.enabling.org/ia/celiac/exp/exp97-2.html#exp97-2s.2 Lots of
good info from experts there and general info at the main page:
http://www.enabling.org/ia/celiac/index.html#nwsspn This web page has a
lot of good info on this and other points, thorough and understandable:
http://www.celiac.com/allergy.html Allergic reaction is a hyperreaction
of immune system to a certain environmental antigen (called allergen),
which may manifest on all the surfaces with direct contact to the
outside environment such as gastrointestinal tract, lung and skin (or in
the blood vessels after the administration of an intravenous drug). By
definition this reaction occurs within minutes (hours) and it is the
consequence of immunoglobulin E production to this antigen. However, if
somebody has had lot of specific IgE immunglobulin to this antigen in
the blood, the reaction may occur within minutes after ingesting,
inhaling or contacting the allergen. This immunoglobulin binds to
special cells (called mast-cells) in the skin or lung or
gastrointestinal tract causing the release of different compounds stored
in these specialized cells. The release of these compounds (e.g.
histamin)  causes different skin rashes (e.g angioedema), asthmatic
breathing or abdominal cramps with diarrhea.

The intolerance term in the gastroenterology means that somebody is not
able to tolerate certain food components. It is a wide terminology.
First of all, it is not an IgE immunoglobulin-mediated process. There
are different mechanisms behind a gastrointestinal intolerances:  The
most common is the lactose intolerance, which is the consequence of a
decreased enzyme activity (lactase) in the small intestine. Because the
lactose is not digested and absorbed in the upper part of the small
intestine it goes down to the last part of the intestine and to the
colon, where the normal bacterial flora hydrolyzes the lactose. The
unabsobed lactose causes a so called osmotic diarrhea. The hydrolysis of
lactose sometimes results in only increased gaseoussness with crampy pain.

 -The gluten-intolerance is a other example. It is an immunoreaction to a
fragment of gliadin molecule in the small intestine, but it is not an IgE
immunglobulin mediated process. A more complex and different immunological
reaction occurs in the upper part of the small intestine, which does not
cause immediate symptoms, but slowly damages the segments of the small
intestine contacted with the gliadin molecule. As the damage goes down and
longer segments of small intestine has the damage (villus atrophy) the
symptoms may manifest.

There is a transient intolerance to milk- and soy proteins in infants.
It may start within 1-4 weeks on milk or soy containing formulas. It may
cause diarrhea and bloody stools. The elimination of these proteins from
the diet results in a rapid improvement (within two weeks). From unknown
reason this intolerance is temporary only and most of the infants with
cow-milk or soy protein intolerance are able to tolerate these proteins
without any problem after two years of age. This suggests a temporary
immaturity or dysfuction in their gut immune system. I hope this note helps
to clarify the difference between allergy and intolerance.

9.  What did you physician respond when you asked this same question?  If
you didn't ask, then why not?  You want to ask the physician: "On what
basis have you diagnosed celiac disease?"  If he is slow to answer
this question, or seems unconfident, then the diagnosis is no good.
(That doesn't mean it is wrong -- it just means that the physician
hasn't reached it for the right reasons.  Anyway, you probably really
want to ask the pathologist [?] who examinined the biopsy samples on
what basis he reached _his_ conclusions.)

It is curious to have such a definitive diagnosis without simultaneous
positive blood work.  (Were you _really_ comsuming gluten prior to the
blood tests?)  The newer tests (particularly transglutaminase) are
supposed to have about a 99% correlation with biopsy, although the
quality of work from individual labs is indeed open to question.

The diagnosis of celiac is serious and life changing.  You shouldn't
simply accept a questionable diagnosis without assurance that the
medical establishment has done its work; NOR SHOULD YOU CAUSALLY
DISMISS IT.  If in giving you the diagnosis your phsyician left you
with any doubts, or even with any unanswered questions, that physician
is not doing his job properly.  If you find it difficult to bring this
up with your physician, feel free to print out this message and give
it to him.